Author Archives: Claire Richmond

I Have Acute Porphyria, and I Am Ticked Off

Kicking off my shoes, I turned my chin up to the top of the hill, where the grassy crest met the garden and the sky beyond. I looked to my right, where one of my dearest friends Jennifer had mimicked my actions and slipped out of flip-flops. Amid the blowing…

The Symptom-tracking Method That Actually Works for Me

Deep in the dark recesses of my bottom filing cabinet drawer is a collection of hard-bound, brightly colored planners from years past. Each agenda represents a year in my life — 365 days of to-do lists, Little League games, project deadlines, doctors’ appointments, birthdays, book clubs, coffee dates, meetings, and…

My ‘Fibromyalgia’ Turned Out to Be a Rare Disease

At 16, I drove my 1992 Honda Accord to my biannual rheumatology appointment. In the lobby, I waited among older patients, who were accompanied by their middle-aged spouses or adult children. Flipping through a three-month-old issue of Reader’s Digest, I felt mildly self-conscious about my nonorthopedic sneakers and cranberry-colored spiky…

The 5 Questions I’m Most Frequently Asked About Porphyria

Four years ago, I was diagnosed with acute hepatic porphyria (AHP), and it’s complicated. It’s a liver disease affecting my blood; it’s also an inherited metabolic disorder with neurovisceral effects. I’m still figuring out how to dumb down the mechanics. For this column, let’s skip the medical jargon. Porphyria…

Using Mindful Self-compassion to Enjoy My Good Days

Like many with chronic illness, I can function in high pain and with low energy. Living with acute hepatic porphyria (AHP), I’ve grown accustomed to carrying its weight around with me, to showing up in the world as if discomfort and fatigue haven’t colonized in my body. Every…